Don’t you sometimes just want to hit the delete button?
We were going through vacation photos and I was struck by how easy it was to eliminate images that we found unflattering. We were able to simply click a button – and they were gone, for no one else to ever see. Eventually our only memories of the trip would be reliant on the images that remained, so in some ways it was almost like those unflattering moments never happened. Right?
I love my social media accounts. I do. But sometimes I scroll through feeling a bit down, inadequate and lonely. Everyone looks so happy. Everyone is surrounded by friends. Everyone’s house is clean. Everyone is taking wonderful vacations. Everyone is resting in their pool on a weekday afternoon…
Then I realize I do the same thing. No one wants to see a picture of my unmade bed, my tears of frustration, or the times when the family doesn’t really like each other too much. No one wants to hear videos of me bickering with insurance companies, or dealing with the day-to-day realities. No one wants to know how often some type of issue simply keeps us house bound.
I started this summer as I do every summer, full of hopeful anticipation that it would bring health, and rest, and time to read, and do lots of nothing. And, like most of the summers before, that is not at all how it turned out.
I could insert a photo of my unread books, or closets that never got cleaned out, or the files that never got shredded. I could flash you a shot of my EZ Pass statement, for the countless trips to the doctor… you get the idea.
As we journey through this world of rare disease, and chronic illness together, I use this blog to keep my perspective straight. Yet, some days it’s hard not to feel like the plate is just a little too full. And somehow, some way…
This summer Cowden’s Syndrome took a run at us- hard. The knee has been, and continues to be a work in progress. The isolation it causes is hard to describe. The sinus infection caused chaos because the medications wrecked a sensitive stomach. The knee medicines added fuel to the fire. Renegade hormones took their toll too. We are still deep in this journey to figure out PTSD and its manifestations, and ramifications, and where we all fit in. Cowden’s Syndrome has done some damage.
Yet, despite all the things we want to delete from the summer, there were some beautiful, simple, and just fun times. There were friends that visited. There were connections with dear old friends, and some new ones too. There was a fun birthday party – something we have not had in YEARS! And, there was Disney… still magical.
With all this on my mind as I went through the vacation pictures, I opted to save some that in previous years I might have deleted.
It was late one night and Meghan wanted to go back to the Magic Kingdom. I took her back myself. We made our way up main street and headed to “Dumbo” the first ride she ever rode in Disney – 10 years ago. We waited on line, and rode our elephant side by side.
I’ve never been so pleased to take a “selfie” in my life.
Then we used a Fast Pass for the Seven Dwarfs Mine Train. Three years ago I didn’t even ride roller coasters. Now, I’m so used to the ones in Disney I don’t give them a second thought. As we headed over the first hill the sky lit up with the fireworks display over the castle. We were in awe. I think it will probably be one of my most magical Disney memories ever. This picture, although not flattering, captures that moment so well.

There were many moments this summer I wanted to “delete.” But, then there were others.
So in an effort to give you a little more “real” and a little less “facebook fancy” I decided to keep these. And, I even decided I like them.
Because life is not pretty. Sometimes its downright nasty and ugly. Most of life is not us in our best clothes, and hair. Most of life is sweats and sneakers… that are hopefully clean and matching. And if we delete all of that, and spend all of our time looking for the perfect, well, I think we’ll miss some magical moments.
Cowden’s Syndrome is not going away. Plans are going to get messed up and changed at inconvenient times. There are going to be lots of housebound days full of isolation and loneliness.
But, as I go through my camera roll, I am going to concentrate on deleting less. I am not going to judge a picture by a random perfection scale. I’m going to judge it by the magic within.

And with this girl, I will learn every single day. I am just so lucky to be her mom, and I won’t delete any of it simply because it’s hard.
We remain forever
#beatingcowdens
